Any help for someone at their wits end?

Hello, I am new here. I am 2 years into my struggle with what I assume is vestibular migraine.
I am at my wits end and I feel like my life is falling apart. I have completely lost myself.
It started 2 years ago. I had recovered from a bout of COVID. Around 2 weeks later I began feeling light headed and dizzy. This progressed to severe stabbing ear pain on the right side and I guess, a loss of balance. I felt like my legs were wobbling, brain fog, head pressure and a dropping feeling.
It would feel like I was swaying / rocking when sitting or lying still.
Slowly over the course of 3 months it went away. I carried on working throughout as Iā€™m a single parent, I had to go on. My GP suggested post viral labarynthis? Although my hearing was always fine.
I fully recovered over the course if a few months until Easter when I got another cold. Like clockwork a week later all the symptoms came back! Ear pain, head pressure, floaty, wobbly when walking, dizzy , dropping feeling.
Again I worked through it. After a few months it went away.
Then this cycle repeated, illness, symptoms return, recovery over months until this lady summer it became chronic. My symptoms never went away completely. I had better days, but never 100%.
I have always been a headache person, never migraines.
I have also always been a car sick, motion sickness person, could never do rollercoasters.
Anyway, I noticed headaches increasing.

I am a ā€˜scientistā€™ I also have a degree in audiology and vestibular science. So I decide I would put myself on a migraine diet. B2, magnesium, coq10 and vit D.

This helped with the headaches. I found some triggers such as gluten, chocolate, caffeine, processed foods, dairy.

Since beginning this strict regiment, I had some days where I felt 80%.
It is a now at a point where they come in ā€˜attacksā€™.
I get the stabbing pain in my right temple, ear pain and then the heavy, foggy head. Then the balance and coordination goes.

I saw DR S over the summer, he said itā€™s probably vestibular migraine, although Iā€™ve had no formal testing.

He recommended Candersarten. It made my blood pressure far too low, so stopped that.
GP then suggested amitriptyline. But I have a bit of a funny hear rhythm (runs in the family) it made it worse plus it gave me an itchy rash. So scrapped that.
Iā€™m now trying pizotifen. 0.5. Iā€™m a week in and I think this is the worst Iā€™ve felt in two years and Iā€™m honestly at my wits end.

I am a teacher so my job is stressful but I am a single parent to an 11 year old with no family support so I cannot take time off.
I am terrified Iā€™m going to lose my job. I am on a final warning for sickness plus they donā€™t believe Iā€™m fit for the job (probably true right now)
But if I leave/ lose my job, I have no savings and we will lose our home plus Iā€™ll lose a career I love and have worked very hard for.
Iā€™m devastated.
This condition, whatever it is has completely taken my life away. I used to be active, climbing mountain, gym, walks. Me and my daughter would travel, have adventures and Iā€™m now a quivering wreck.
I now suffer with severe anxiety( new since this condition arrived) and I would say Iā€™m severely depressed.
I have 2 weeks off this half term so though pizotifen might help but this is the worst Iā€™ve felt?
Does it get better?
I have brain fog to the point I hit the accelerator instead on the break pedal this morning, I left the keys in the door, the cooker on, Iā€™m slurring my words. I feel like I could sleep all day long. My head feels heavy and it feels like the world is not ā€˜realā€™ I feel detached.
Iā€™m also having terrible paresthesia.bits driving me crazy. I donā€™t feel like I could work at all or Iā€™m safe to drive. I could actually function before I started taking this medication so I donā€™t know what to do.
If anyone got this far, thank you.
I just want my life back. Iā€™m feeling so desperate and alone, dragging myself through each day. My life has fallen to pieces.
I donā€™t know whether to quit this medication now before it makes things worse permanently.

Any help or advice would be so welcome.

Thank you.

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Welcome to the forum, @H_Ryan! :tada: Everyone here is super friendly and eager to help each other out. Itā€™s like a cozy support group for fellow dizzy humans! If you havenā€™t already, I highly recommend checking out the Welcome Topic here: Welcome to mvertigo! and the posting guidelines here: Please read this before posting.

Remember, youā€™re not alone in this journey, and thereā€™s a whole community ready to support you! :star2:

Wow, youā€™re in a tough situation. My suggestion is that you stop trying to navigate this by yourself and get an appointment with Dr. S ASAP. Cry if you have to when making the appointment. If that doesnā€™t work go see your primary care physician right away. If you say ā€œIā€™m falling apartā€ or ā€œdonā€™t know if I can hang onā€ you should be able to get an urgent appointment. No shame ā€“ be honest about your depression and anxiety, your reaction to the latest drug, and the threat of losing your job. You need help and you need it now.

I assume youā€™re in the UK. In the US a physician can provide documentation that you have a disabling health condition and your employer cannot arbitrarily fire you ā€“ they must offer you accommodations. Find out if there is something similar available to you so even if you have to take some time off work you can protect your job. But first make those phone calls! Let us know how youā€™re doing, ok?

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I had similar issues with meds, Iā€™m currently unmedicated right now but have a private appointment in December with a neuro otologist. Candestarten did nothing for me and dropped my bp too low, Amytriptyline and Notriptyline gave me tremors and a rapid heartbeat. One that is often recommended here is Effexor or Venlafaxine in the UK.

Its an SNRI medication and Timothy Hain, one of the leading specialists in VM really rates it. Its becoming more widely prescribed, especially in the US. Unfortunately I tried it and after 10 months had to conclude it wasnt helping, but at least I did tolerate it.

One thing about VM is there are a lot of choices, Flunarizine is meant to be particularly good for vertigo but in the UK it has to be prescribed by a consultant as it has to be imported in. Topiramate is an anti epileptic which is often used for migraine dizziness and balance issues. Weā€™ve had members succeed with that. Then there are the newer CGRP injectables. Weā€™ve heard encouraging things about those for VM.

Is it possible your GP can sign you off with a sicknote, Iā€™m sure the stress and anxiety of worrying about your job is hindering your progress. Stress is a real problem with this condition as it just ramps up the symptoms. Teaching is a high stress job at the best of times, let alone when youā€™re chronically dizzy.

A lot of members report going through intense stress before their VM started. I didnt personally but I think my MH has declined hugely over the last 2.5 years. Iā€™m trying to work on relaxation techniques and being bored with my symptoms and not focusing on them but its very hard as they are all consuming. There are good resources on Youtube, The Steady Coach, runs free courses for people with VM/PPPD. Maybe check her out.

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Parathesia is a known side effect from Pitzotifen, Iā€™m wondering if this isnt suiting you. One of the issues with migraine is it can make you very sensitive to medication ( as well as other things). If its making you worse to the point you cant function then its probably not for you. Depression is a rare but noted side effect, as well as weight gain, sleep disorders.

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Hi Ryan, Iā€™ve been in your shoes for years and I am back to normal now. My drugs in order: Paxil->Verapamil->Topiramate->Amitriptyline/Emgality(CGRP)->Propanalol->Metoprolol. That was over the course of a couple years and its really tough to try those meds when youā€™re so messed up. I had lots a problems with them tooā€¦ Some mess with bowels, others can give you insomnia, make you feel on another planet, etcā€¦ but its all different for each person and there is no way to know what theyā€™ll do until you try them. I agree with what @DizzyandConfused has posted. I also think if you are this bad one week on Pizotifen, its likely not a good match. Often things will get a bit worse before they get better, but if this is the worst youā€™ve been in 2 years that doesnā€™t sound right to me. I think Effexor would be a good next try or possibly a calcium channel blocker like Verapamil or Flunarizine. I would also add that the Cefaly device is a heavy hitter (proven scientifically) and I still use mine daily as a preventative - zero side effects as its not a medication and can be used in parallel with medications. Highly recommend it. Any of these treatments you can do in parallel to really knock things down is best. CGRPs can often be administered in parallel to other meds too, but check with your provider. I also had zero side effects with Emgality (CGRP).

Slurred speech, yep had that, could hardly read my toddlerā€™s bed time stories, made me cryā€¦

You will make it, I was as bad as you 2 years in and now iā€™m back to normal! Just keep trying and moving to the next treatment. Stay connected with us!

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Hi @H_Ryan,

I hope this forum can be beneficial for your recovery like it was to me.

I was down the rabbit hole like you 4 years ago. I tried propranolol first, and although others could tolerate this easily, like you I felt the worst Iā€™ve felt ever. Itā€™s true, our bodies are built differently and our response to medication is different, I lasted 4 weeks and swapped to Pizotifen.

Pizotifen for me helped so much. The first morning after taking it I could not wake up. After a week, I was still zonked but it improved. I upped every 3 weeks until I got the 1.5mg. These increases were no where near as difficult as the first initial dose.

But unlike you I wasnā€™t working. I am a teacher too and took nearly 6 months off. I was lucky I had support.

Your depression and anxiety sound all too familiar and I can absolutely resonate with what youā€™re going through.

Definitely see a specialist. Ask them about other medication possibilities. I wish you had some sort of support around you.

Keep reaching out here for questions or advice.

Prayers for you

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Thank you for your reply and kind words. I think the most stressful thing is the pressure Iā€™m under. Iā€™m sure the stress is making it all worse. I am absolutely terrified that Iā€™m going to lose my job, which would then mean my home.
I feel like I need 6 months out to try and recover but itā€™s just not an option for me. You probably understand how hard it is standing in front of a room of teenagers when your head feels like itā€™s going to explode and you feel like you are dropping in a lift, then the anxiety pushes itā€™s way through. Itā€™s hell. Iā€™m on a 2 week half term right now and even the thought of lesson planning it reading email is making me feel physically sick.
Itā€™s hard when itā€™s all on me, work, shopping, bills, cleaning, the endless ā€˜life tasksā€™ I feel like there is no room or time to get better. Itā€™s a very cruel illness.
I have stopped the pizotifen. Iā€™m so glad it worked for you and you have improved.
Itā€™s really set me back. My balance is all over the place whereas before I was coping.
I canā€™t get another numerology appointment until late November so Iā€™m going to try to struggle through.
My GP doctor refuses to help any further. They have washed their hands of it, apparently vestibular migraine is beyond their knowledge.

I wish I could take time off, Iā€™m in a final warning now. I understand where my employer is coming from. Iā€™m unreliable at best. Even a ā€˜sick noteā€™ will not help.
I have provided my employer with all the evidence they could need but they are not interested.
Itā€™s a terrifying position to be in. Loss of job would mean loss of home and I have no support network at all. Just me and my daughter, who relies on me.
I think the stress is probably making things worse for me.
Thank you for your reply and thank you for your advice.

Thank you for this reply.
I never really felt any stress, anxiety or depression. I have always been calm and level headed, until this.
Mine was certainly triggered by COVID, vestibular neuritis and now migraine.
I would now say I am very depressed and incredibly anxious. Not a good mix with this condition.
They gave refused topimirate/ topimax as Iā€™ve lost weight from the stress of this condition. They have not mentioned venlafaxine though, maybe with my me tal health that could be a worthwhile option.
I work myself up into such a state trying news medications. Now Iā€™ve had such a bad experience with pizotifen, I dread trying any more in case they make it worse. I just about muddle through on no medication so Iā€™d rather be like that I think, although itā€™s not much of a life, fighting through each day and collapsing into bed!
Thank you for the recommendation, I will enquire about it.
I will also ask about CGRP when I next see the neurologist but thatā€™s not until late November.
I guess Iā€™m just looking for improvement immediately so that I can keep my job. It seems thatā€™s impossible and itā€™s always going to take time.
Thank you again for your reply. I have no one I can talk to about this in real life. Iā€™m very grateful that strangers take the time to reply.

Unfortunately that was the reaction I got, VM isnt as rare as many doctors believe, its quite a common cause of dizziness, what it is is underdiagnosed. People presenting with dizziness are told its a virus, vestibular neuritis or Meniereā€™s.

GPā€™s are fairly limited in that they can usually only prescribe 3 anti migraine meds, Propranolol, Amytriptyline and Topiramate. Once youā€™ve exhausted those theyā€™ll want to refer you to a migraine clinic or neurologist.

A lot of the GPā€™s admitted VM was beyond their expertise. I wonder if they could consider prescribing a short course of Benzos like Clonazepam. Its a rescue remedy, not a preventative but it certainly works for me, knocks the swaying, unbalanced sensation on the head. My neuro prescribed 0.5mg to be taken alternate days.

Clonazepam is a long acting benzo so its effects can last. Benzos can be a problem due to their potentially addictive nature, but so can many other drugs. Whilst you are between meds it could be an idea, Clonazepam is a vestibular suppressant.

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Hi, personally, all of the symptoms that make no sense - blame COVID. I have vestibular migraines (after being told it was just a headache, suck it up). Before the new classes of meds came about (Emgality, Aimovig, Nurtec, Qulipta, etc) it was difficult at best to manage, even with Botox and vestibular rehab (physical therapy to make you less sensitive to movement). Rehab helped with the momentary dizzies (I used to think I was crazy because it would last a few seconds) I learned the hard way thatā€™s signal for migraine. Periodically I break out the exercises to do a ā€œtune upā€.

I understand the work pressure, my boss had that talk with me because propranolol made me so mellow with no ā€˜sense of urgencyā€™ to get things done.

Talk to your doctor about being aggressive with migraine treatment and hit the new anti-CGRP meds (Qulipta for some reason seems to be a miracle for many people). My preventive combo of Emgality, Qulipta & Botox made a world of difference. The older treatments didnā€™t work & Iā€™m sensitive to downers.

BIG NEWS: I found this New Migraine Guidelines Aim to Help Patients Beat the Pain - quote from the page: ā€œHowever, the 2024 revision of the AHS guidelines marks a significant shift in this approach. The updated guidelines elevate CGRP inhibitors to first-line treatment options for both chronic and episodic migraines. This change underscores the importance of early intervention and reflects a growing body of evidence supporting the effectiveness and safety of CGRP inhibitorsā€

On to our friend Covid, it messed me up royally with high BP and wicked headaches. My neurologist told me she had friends with normal BP all of sudden have high BP. She said it will resolve itself in 6 months & the headaches should go away. BP fixed itself, but the nasty headaches still haunt. Itā€™s like a migraine but worse, NOTHING touches it except ice packs & a dark quiet room. It took me a while to figure out the differences, countless times I took Maxalt & Nurtec figuring in 2 hours Iā€™ll feel better, surprise no relief.

There are two morals to my story: once you have Covid, traditional medical thinking doesnā€™t always work; they donā€™t know all the strange things it has done to people. Second, with any migraine treatment, your mileage may vary; what works for one person may not work for another. Congratulations on following the migraine diet to find your triggers, itā€™s not an easy task. Keep advocating for yourself, information is power.

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My first medication was like this for me as well. I was so scared I waited a long time to try another. However, they wonā€™t all be like that, trust me. I wish I wouldnā€™t have waited so long to try again, as I didnā€™t get anywhere without meds. I even took 6 months off of work and just tried to ā€œdestressā€ to see if that helped and it didnā€™t. Things got a bit worse actually because I had more time on my hands to ruminate and felt isolated from people and it was quite difficult to go back to work after that. Having said all that, the job that I quit was a bit too much for someone with VM and when I started working again I did it part-time work and now my new full-time job is a lot less stressful. So, I guess I just wanted to clarify that finding lower stress work is a good thing and better than not working at all.

EDIT: Also reminder to take a look at the Cefaly device, I think its available without a prescription now so you donā€™t even need to wait for your Neurologist to get going on treatments. And fear not, itā€™s not a medication and has no side effects and is as effective as many of the medications out there for migraine. Itā€™s not cheap, but does have a 60-day return policy. It helped knock down my head pressure considerably, although I also needed medication along side it.

Please please donā€™t get discouraged. It will get better. You have had relapses in the past, but all the time your body returns to normal. That is a good sign. Covid and a cold worsen my symptoms as well. We need to learn to live with those relapses, it is part of our condition. I have heard good things about Pizotifen, but it is different for every person. My drug is Nortriptyline 10 mg. I felt a positive change the second day I took it. It gave me stability when walking, which is huge. The side effect is an increase in my pulse. If you want ask your doctor about Nortriptyline. I have read a lot and it works for many people. Also it is an antidepressant and it will help with your anxiety, which is totally understandable. I know how stressful is an academic career. I am in it as well. Good luck, you will get better!!

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